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April 13, 2010

Today's EEG - Not so good?

Some days I resent my MD from wikipedia. Today is one of them. I wish I were one of those parents who could blithely go along with doctors and accept what they're told... Not really. That would be a heck of a lot easier than the hell I am putting myself through today, but someone needs to be awake at the switch for Bertrand's sake. Apparently that person is me.

Okay, enough preamble. What did Dr. Mom get from Bertrand's EEG today?

First of all, and this should be obvious, sleep deprivation for a child with epilepsy is a BAD idea. This is the first EEG Bertrand has been sleep deprived for and it sucked. I guess for most kids it helps them fall asleep and not move as much, but let's be honest with ourselves here: Bertrand has a movement disorder. His last sleep study confirmed that he moves almost as much asleep as he does awake--which is saying something. Furthermore, rather than seeing the new, improved Bertrand we got the old, seize-y, exhausted Bertrand. His new EEG looked like this:

Secondly, this EEG confirmed that Bertrand has photosensitive epilepsy, which we suspected. During the intermittent photic stimulation Bertrand's EEG looked like this:

Now, what had me really upset about this EEG wasn't the brain portion as much as Bertrand's electrocardiography (ECG or EKG) line, which is an interpretation of the electrical activity of the heart, during this EEG. Whenever Bertrand moved or sighed really big the EKG would hitch a little (which is normal) but during this period Bertrand was completely STILL. Here is the series of images of that over a period greater than a minute--look at the red EKG line on the bottom.

At first I thought that there was something wrong with the contact on B's chest, but as you saw, the EKG returned to normal on it's own. Since there was no video recording of this EEG, the technicians were under the impression that Bertrand had simply been moving or fussy during this period--which wasn't the case! Bertrand hadn't moved at all! So now I am faced with the decision of whether I should bring this up to B's neurologist. I happen to know that Bertrand's echocardiogram done at Duke was perfect. Will his neurologist think I am crazy? a pest? Or even worse, could this serve as a red herring, causing her to take even longer to adjust Bertrand's treatment? I really don't know if I should say anything. I'll have to consult with my favorite neurologist first.

Based on this EEG, I think that Bertrand may still be on track for trying ACTH treatment for his seizures (which would require coming off the ketogenic diet first). Furthermore, whether or not there were any changes in the EEG doesn't matter because, as my daddy always says, "you must treat the patient, not the EEG." Bertrand HAS improved over the last few months: he is more stable, he is smiling, he is laughing, he is more verbal, and overall his quality of life has improved significantly. And, that's what matters.

UPDATE: Whew! Spoke with my Dad in regard to Bertrand's EEG. The EEG is still highly abnormal (duh) but he thinks the one bad EKG episode may have been due to electrical interference from another electrode, since Bertrand was having a particularly bad subclinical seizure. Part of what suggests this is that the red line went from resembling an EKG line to resembling an EEG line, the other part is that Bertrand is still alive. Lovely.

I know it is not easy to find satisfaction in less than seizure freedom, and it must have been so frustrating that B was so seizey for the EEG, but truly he seems to be doing so much better. I am so thrilled for you!

I always hated the sleep-deprivation thing, too. It seems so wrong to purposely bring the seizures back. That's one reason I appreciated the walking EEG we had last time, although Jade did still end up getting a lot less sleep than she should have, just being on a cot in an unfamiliar(ish) place rather than in bed at home.

B's EEG reminds me quite a bit of Jade's! Well, her earlier ones. (MUCH better now, thank God.) The first time I saw an EEG in progress I was, like, "Those lines aren't supposed to CROSS, are they?"

So glad to read that the EKG was probably just a mechanical (or rather electrical!) problem.

When we brought Ava in for her last EEG, Craig point blank refused to sleep deprive her. His reasoning was that her awake eeg and sleep eeg showed no difference the past two times. We just pretended we sleep deprived her and blinked surprize when she refused to fall asleep ;-)She also showed crazy photosensitivity during that part of the eeg which we knew as well. We are careful with flash photography any crazy light toys. I find the light from the computer when scrolling also elicits a seizure so although she so loves to consult the web MD, I have to limit her sessions.

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